Disabilities-R-Us

Created by and for people with physical disabilities.

Healthcare

Nov 04, 1998

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  ChanServ ([email protected])
  disabled
  Mooooooo ([email protected])
  CindyB
  LoneWolf
  haa
  Driveshaf
CindyB: how are you Helen?
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CindyB: hi anny1
anny1: hi
LoneWolf: ok Let's begin meeting now all greetings off Cindy?
CindyB: ok
LoneWolf: Cindy is typing for me tonight so giver her a second to type intro
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LoneWolf: OK, Last week we discussed healthcare in America and the problems we are having
LoneWolf: This is a continuation of that meeting
LoneWolf: I wrote to a friend that works with disability issues
LoneWolf: The following is what she found out for us
CindyB: Judi,
CindyB: Sorry but me and mine are not going to be too much help! We agree
CindyB: that the policy makers need to hear from the consumers about their problems,
CindyB: concerns, and fears about health insurance including Medicare and Medicaid.
CindyB: However, due to the tendency to ignore - your voice needs to be loud. The
CindyB: more folks you can incorporate into your cause the better off you will be!
CindyB: In other words do as we did with HR16, send the word out to anyone that will
CindyB: listen to you, Choose a day that all of you will plaster the offices of
CindyB: Government with your concerns.
CindyB: Try to have enough people sending them
CindyB: e-mails and faxes also telephone calls on this day to tie them up for the
CindyB: day! Hopefully you will have enough persons to overflow into the next day!
CindyB:
CindyB: Your voice needs to be heard, but it must be unignoreable! You will want to
CindyB: inlist the help of other on-line disabled persons! Anything I can do let me
CindyB: know!
CindyB: Sorry I Couldn't Help More
CindyB: Love in Christ
CindyB: Deidra
CindyB:
LoneWolf: rather discouraging, huh?
LoneWolf: comments?
CindyB: well she made it a definant point to be loud!
CindyB: something they won't ignore
LoneWolf: anny?
LoneWolf: haa?
LoneWolf: I'm not sure we have the numbers required
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anny1: what is HR16?
haa: I had trouble following the info that was listed here.
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LoneWolf: not sure
LoneWolf: haa what was the bill you were referring to?
CindyB: Something we need to look up I guess.
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haa: Mi CASA, it's to pay for alternative home care rather than going into a nursing home...for elderly and disbled alike.
haa: disabled
LoneWolf: I don't know about everyone else but Deidra's letter kind of took the wind out of my sails
CindyB: how about a petition with lots and lots of signatures? Just for starts.
haa: i didn't see deidras letter.
anny1: i was not here last week what are some of the key concerns with this group?
LoneWolf: we discussed the problems with healthcare
CindyB: Did anyone see the letter or do I need to resend?
LoneWolf: like medicare and medicaid patients not being able to get proper care etc
LoneWolf: resend it Cindy a little at a time
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CindyB: ok.
CindyB: Judi,
CindyB: Sorry but me and mine are not going to be too much help! We agree
CindyB: that the policy makers need to hear from the consumers about their problems,
CindyB: concerns, and fears about health insurance including Medicare and Medicaid.
CindyB: However, due to the tendency to ignore - your voice needs to be loud. The
CindyB: more folks you can incorporate into your cause the better off you will be!
CindyB: In other words do as we did with HR16, send the word out to anyone that will
CindyB: listen to you, Choose a day that all of you will plaster the offices of
CindyB: Government with your concerns.
CindyB: Try to have enough people sending them
CindyB: e-mails and faxes also telephone calls on this day to tie them up for the
CindyB: day! Hopefully you will have enough persons to overflow into the next day!
CindyB:
CindyB: Your voice needs to be heard, but it must be unignoreable! You will want to
CindyB: inlist the help of other on-line disabled persons! Anything I can do let me
CindyB: know!
CindyB: Sorry I Couldn't Help More
CindyB: Love in Christ
CindyB: Deidra
LoneWolf: anny last week we heard the horror stories of several people
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haa: Whw is deidra?
haa: who
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LoneWolf: Deidra is a girl that joined the list for a few days
anny1: i heard from someone who knows, that individual contacts like e-mail, letters and calls are taken more seriously than petitions
CindyB: Who are our consumers though? Where do we get the numbers, e-mail addresses, etc..
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judi1: sorry server problems
CindyB: me too
judi1: she works with others in getting bills approved etc for the disabled
CindyB: Can we get needed info fro our doctors or our insurance agents on who to fax or e-mail about the problems and questions we have?
CindyB: from
anny1: we are the consumers
judi1: anny healthcare for some of our members has hit rock bottom
anny1: senator and represenatives are the polocy makers
CindyB: especially for home health care
CindyB: I Deidra from the US?
judi1: that's what we were discussing anny trying to get the att of the lawmakers
judi1: yes
judi1: I have a ghost Moooooo
CindyB: this would of been a great time to get their att. due to the elections
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judi1: any ideas?
haa: If you want to be politically active as a way in trying to make it better, I think you neesd to get in touch with some groups that are actively doing it now...like MI CASA and AARP
anny1: independent living centers may have specific info on laws
judi1: good point haa
CindyB: AARP is a big one around here
judi1: another good point
judi1: Camille were you here last week?
Camille3: no
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LoneWolf: Cindy could you fill her in real quick
anny1: i believe there is something called texas attendant task force also
LoneWolf: what's that anny?
CindyB: Last week we had a discussion about Health Care issues in the US and in Canada
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CindyB: and we were trying to come up with a plan
CindyB: on how to get better help from our insurance company's
LoneWolf: our numbers are going to be small anyway you look at it
CindyB: instead of them setting such low limits on our health care
LoneWolf: esp Medicaide and Medicare
CindyB: even with the medicaide patience
LoneWolf: ok should we or should we not draft a letter to send to our representatives?
anny1: i get mail from them they are for maintaining and increasing attendant care, i havn't been real involved but they are linked to colilition of texans with disabilities
LoneWolf: could you write them anny and ask for suggestons on how best to make our concerns known?
LoneWolf: What do you all think of the solution Deidra had about flooding offices with faxes etc
CindyB: Excellent idea
anny1: i can contact the local independent living center and find out info, be glad to
CindyB: if we aggravate enough, they have to answer sooner or later
LoneWolf: haa?
LoneWolf: anny?
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LoneWolf: atr
CindyB: that would be great anny
haa: Yes, what anny is going to do seems like a good route. Thks Anny.
LoneWolf: yes it is
LoneWolf: sorry anny missed it
anny1: i'll find out what i can
LoneWolf: I don't feel comfortable with the flooding thing
LoneWolf: personally
CindyB: I know it must be different state to state, so we could all try founding out something in our own state and compare
anny1: what is your concern wolf
CindyB: finding
atrpilot: been on medicare for 22yrs.it has just gotten worse as long as they got us down it will be hard to get up.
LoneWolf: with the flooding?
Camille3: yea can't do anything wit medicare
CindyB: atr, don't give up, we'll get to the bottom, just trying to figure out how
LoneWolf: guess its the old big brother thing-don't make em mad-dumb I know
CindyB: not dumb, cautious
LoneWolf: atr how did it get worse?
CindyB: could get worse, I guess
atrpilot: just kept taking benefits away and raising premiums
haa: We need to get better informed about issuses and problems before deciding what to do about any of this stuff. I feel strongly that on the attendant care issue and would like to see people get informed and knowledgeable about MICASA.
CindyB: true
LoneWolf: ok
anny1: well i will find out how other groups have approched it and get back to our group ok?
LoneWolf: Its best to go in knowing our stuff I agree
haa: okay thks anny.
LoneWolf: be good anny'Haa could you inform us about MICASA
CindyB: cheap leagal counciling would be good!
LoneWolf: maybe give us a bit more info about it now?
atrpilot: I went to a hearing in D.C. in 1980 begging for spinal cord research money 15 million. They promised us the world,but gave us nothing.
LoneWolf: wow
haa: yes, i'll send info about MICASA..but you can get alot of information and web-sites just by running a search on MICASA.
LoneWolf: makes me feel wimpy for not wanting to flood offices
LoneWolf: atr you are on Medicare-can you get a paid attendant?
LoneWolf: does anyone here have a paid attendant?
atrpilot: don't need one can only get 2 catheters per week burns me up bladder infection all the time
haa: Nope not me, I've been paying out of pocket for 17 years.
LoneWolf: but if you did need one could you get one?
CindyB: LW, is in bad enough shape she needs some homehealth care, but because she isn't as elderly as they want her to be, she can't.
LoneWolf: plus I'm chronic
CindyB: now is that fair?
LoneWolf: haa I can't afford an attendant
CindyB: most people can't, so they have to suffer
Camille3: if the doc ordered attentant care doesn't medacare pay for part
LoneWolf: Moofasa, how does WW get her attendant?
CindyB: this is a big issue
LoneWolf: atr?
LoneWolf: haa?
haa: Well I meant is that i am not on Medicare, nor Medicaid and I won't qualify unti August of 1999.
Mooofasa: she hires them
LoneWolf: oh
LoneWolf: pays out of pocket?
Mooofasa: i dont know
CindyB: haa, what is the qualifications?
LoneWolf: I don't understand that haa, I have Medicare A
atrpilot: Someone must pay for Wacky to have one, but is he on Medicare?
LoneWolf: I don't know
haa: I talked to Social Secirity about Medicare a,d what I was told, is that Medicare will pay for homecare if you're homebound but it's getting harder and harder to qualify.
LoneWolf: are you on disability?
anny1: what are specific concerns? attendant care, home health care anything else.
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Robin-1: hi all
LoneWolf: yes
LoneWolf: last week on person told that she was unable to get meds because her med allowance was used up
haa: Yes, I am on long term disabliltiy and social security disability.
LoneWolf: hmmm
anny1: ive heard that too haa if you can go out at all likek to dr. they say not homebound
Camille3: i'm concerned about when we need nursing home care who will pay for that
CindyB: yes Anny, I've heard that
LoneWolf: me too Camille
CindyB: But what if you can go to the doctor, but can't get yourself there and have no one to take you?
Robin-1: pardon me is this discussion about healthcare restricted to those in the USA?
LoneWolf: this person had Medicare and had a $800/yr allowance
LoneWolf: no
CindyB: Robin, no, all over the country
LoneWolf: Robin we need ideas-can you share your healthcare system with us
haa: Oh, they pay for nursing homecare, but you wind up giving up all your assets and wind up in poverty.
Camille3: yes that I no haa
Robin-1: well i use the national health service which is free to all
LoneWolf: that's what we had to do with my mother in law
LoneWolf: England?
LoneWolf: Ireland?
Robin-1: UK
CindyB: but now, 800.00 doesn't last 2 months, much less a ear
CindyB: year
LoneWolf: do you pay into it Robin
atrpilot: my mother is in nursing home medicare pays nothing, medicaid is paying ,but you have to be destitute- no home, no savings, nothing.
Robin-1: England Scotland Wales Northern Ireland
LoneWolf: ok
LoneWolf: that's right atr
anny1: i think you have to have less than 2,000 in assets to qualify for medicaid in tx then social security will pay for nursing home
Camille3: i have aunt in same condition pilot
LoneWolf: our ins co has nursing home ins but it is sky high
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Robin-1: everyone pays a small proportion of their income to the service regardless of whether they are unemployed or not
CindyB: Why is it the US is suppose to be the land of the free and take care of their people, but the other countries seem to have more going for them with medical help!
LoneWolf: Robin we have learned that Canada and Aus are the same way
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LoneWolf: why is US having so much trouble with this?
anny1: is the care sufficient robin?
Robin-1: well they are both memebers of the British Commonwealth of nations
bayah: good got in have I missed anything?
atrpilot: anny1 not medicare - medicaid from state not government
LoneWolf: we're not getting anywhere bayah
LoneWolf: yea Robin is the care good?
Robin-1: there are private medical care systems in this country too
anny1: atr medicaid is federal monies administered by state i thought
Robin-1: people have a choice
CindyB: It is almost 9 LW, should we do the questions?
LoneWolf: IC
Robin-1: which thy wish to use
LoneWolf: yes Cindy go for it
atrpilot: could be anny
CindyB: 1. What other research has been found?
haa: LW, I read into the long term health ins which costs an arm and a leg, and they are not going to survive the long term procedure...they'll go bankrupt...they are going out of business....it is just not a good solution to the prob;em..
CindyB: Which we have none really
Robin-1: but if thwey go private it is very expensive
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LoneWolf: I agree haa
bayah: did anyone get any info on what the other countries were doing as far as their healthcare I thought the gal from Austrilia was going to get something to us
Robin-1: my mother is in a private nursing home
LoneWolf: she didn't show
LoneWolf: expensive Robin?
Robin-1: she pays 2000 pounds a month for that
CindyB: Has anyone doen any research at all since the last meeting?
CindyB: done
LoneWolf: bayah, Robin is telling us about UK
LoneWolf: close to Aus
Robin-1: when she has used up all her capital and has only 8000 pounds left
LoneWolf: how much is that in dollars?
Robin-1: she will return to the public suystem and have her fees paid for her by them
Robin-1: one pound equqals 1.61 dollars
LoneWolf: can she stay in the same place?
haa: 1.65 dollar = 1 pound
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Robin-1: yes she is not moved from there and gets the same treatment as before
Robin-1: only the way of paying changes
LoneWolf: but she has to use up her assets
Robin-1: correct
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LoneWolf: sounds like here
LoneWolf: that's what a lot of people do here
anny1: the way us system is messed up socalized health care is looking good to me
LoneWolf: well anny can we count on you to bring back info?
Robin-1: the only difference is apparently the fact that in this country there are a lot of eccentric people
LoneWolf: how so Robin?
Robin-1: in the uSA and Canada they are not tolerated in the same wayas they are here
LoneWolf: don't understand
haa: My input is this...we all need to do our own research...I suggest run a search for MICASA and visi the AARP site...as a start. The attendant care issues are all ove rthe place.
LoneWolf: ok sounds good
CindyB: this is good Haa
Robin-1: you saw the movie Cocoon?
LoneWolf: yes
CindyB: yes, years ago
anny1: yes wolf here next week or will it be another topic??
haa: Cocoon? yes.
LoneWolf: I don't know-what does everyone think?
Robin-1: this is a good example of how a nursing home is run in the USA
Robin-1: this would not happen here
CindyB: How about half hour of continuing this, then switch topics
CindyB: hate to miss out on all the good info we've been trying so hard to get
LoneWolf: ok-research first
Robin-1: dont worry i am leaving shortly
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LoneWolf: no Robin not tonight next week
LoneWolf: oops
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anny1: ok with me cindy
LoneWolf: ok
CindyB: question 2?
CindyB: this is for you haa
CindyB: 2. Haa, would you explain the information you found?
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LoneWolf: how about we submit ur research to the mailing list so everyone can see it before meeting?
LoneWolf: I think she did Cindy
CindyB: good idea
bayah: I think that it would be good if we got some attention on perhaps some of the talk shows they talk about every minority under the except the minority of being disabled because there much more issues than healthcare most of the public feels that if you are disabled your being taken care of
CindyB: question 3 is for jrt, who isn't with us tonight
CindyB: 3. jrt, could you share what you discovered about Aus healthcare?
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LoneWolf: sad bayah isn't it
anny1: i don't think talk show would lend any validity to cause
CindyB: we've heard sme on Aussi care, so I guess we can go to question 4 when you are ready LW
LoneWolf: I'm gonna research and draft a letter and send it out to you all-maybe anny will tell us who best to send it to
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haa: I agree with you anny.
LoneWolf: go Cin
CindyB: 4. As a group, how do we want to do this or do we want to try?
bayah: sure is but it isnt going to get any better unless a few of us stand up and gripe and collective make our voices heared
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LoneWolf: that's what we are trying to find out how to do
CindyB: OK, so as a group, we know we aew going to do research first, then what?
anny1: lets see if we can get ducks in a row before we march
CindyB: are
LoneWolf: ok we need to generate a little more interest too
CindyB: Isn't wacky suppose to rough draft a letter?
LoneWolf: could you guys talk this up with the others?
haa: I feel we have touched on at least 20 major issues. Now, which do do we attack first.
LoneWolf: it is mammoth isn't it?
haa: yep
LoneWolf: what's most urgent?
anny1: ? i am not familiar with the mailing list for this group how do i post to it
LoneWolf: basic medical care?
CindyB: home health? Home Attendents? Other?
haa: My preference is homecare, like attendant care alternative to nursing home.
bayah: I think a talk show wpould because the biggest problem or one of the biggest problems that I see is that the non disabled society thinks everything is fine with us the dont know and if we use some sort of the media to get the point accross it might help It might take more than once but we could keep at it so they know we wont go away
LoneWolf: go to http://www.members/tripod.com/~disabled
LoneWolf: and sign onto list
LoneWolf: good idea bayah
LoneWolf: how would we proceed?
CindyB: get the news in on it, they are a good publicist for sure, and can be very dramatic!
CindyB: what about Paul Harvey? He's a great research person
haa: I don't think the non-disabled want to know...they are more concern with is there going to be any Social security bene's for me when I retire...
LoneWolf: true
LoneWolf: Cindy could you see if you could find out about Paul Harvey?
anny1: ok i will talk to my friends in social work and post to list what i find out
LoneWolf: thanks anny
CindyB: Yes, he is actually online!
anny1: i agree haa everybody interested in self
haa: If the disabled mop up all the money...there ain't gonna be anything left for the non-disabled.
LoneWolf: bayah know how we could contact a talk show?
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LoneWolf: ok lets get all our ducks in a row and spend part of each meeting for a while working on it-ok?
CindyB: I have a good friend and ex teacher who also is a news paper jornalist, she may be able to help
LoneWolf: good
LoneWolf: everyone agree?
anny1: do we really want to go down the talk show road? they tend to make people look like victims
LoneWolf: depends on which show I'd think
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CindyB: true, and those who have to pay out for medicaide who don't use it, can be harsh
bayah: We can prove that we have poor healthcare we can also bring up that often we are dicriminated against and we cant fight it I myself can prove that we are not treated equally under the law our children with disabilities arent getting the education they deserve most of any monies goes for the normal classrooms housing can be dificult and just because we have the A.D.A. that doesnt mean its carried out in every state
CindyB: ok, last question before we run out of time
CindyB: 5. If so, let's begin composing a letter. I'll turn the floor over to Brian now, who is going to draft the letter for our approval.
haa: I agree with anny...the talk-show way is not the way to go.
CindyB: And Bri is away for the night
LoneWolf: maybe there's more than 1 way though haa
CindyB: public and media attention is good, no one wants to be caught on the spot!
LoneWolf: I mean bayah might be good at that whereas some of us might do better with legislatures
anny1: talk shows get attention but not in a productive way is my thought
LoneWolf: this could be an ongoing thing to keep attn on it
CindyB: we can send articles to magazines though, USA today, Time Magazine, Newspapers...etc..
LoneWolf: you know-write letters one month
LoneWolf: Paul Harvey one month etc
CindyB: we've got to start talking out loud in public
CindyB: as Deidra said, Be loud, be heard
anny1: we will need contacts as #'s
CindyB: Paul harvey is on the air at least 3 times a day on most radio stations
LoneWolf: I think each of us should participate in the ways we feel comfortable with
CindyB: true
bayah: We need to make sure that we are not made out to be the poor me type of vicims but I get so upset that they have some disabled person on who is doing some sort of thing that a normal person takes for granted on doing why cant we be trteated like if we ski and use a body ski to do it whats so special it something you like doing so what why make a big deal out of something that just because yous something diffrent it makes news
CindyB: I've got a big mouth, I'll do anything
CindyB: I'm not a victim, just fighting for rights of people who need it
bayah: Right on cindy
CindyB: I may be the victim one day and need this myself, might as well start now
CindyB: think of our kids, their kids
LoneWolf: well we have a lot to think about and look up-Cindy would you check in phoonebook for Indiana for -what am I looking for
CindyB: yes I wil
CindyB: will
LoneWolf: anny whats that called again in Texas?
LoneWolf: anny?
CindyB: Helen, what were you mentioning other than AARP?
anny1: texas attendant task force and colilition of texans with disabilities
LoneWolf: is that just for Texas
haa: MICASA
CindyB: thanks
LoneWolf: bayah what state are you in?
LoneWolf: max?
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anny1: as far as i know but surely other states have similar groups
max: calif
LoneWolf: wonder what they would be called?
CindyB: I'm going to find out, If I'm on the phone al day tomorrow
LoneWolf: maybe you and haa ould check out ca phone books
CindyB: all
max: contact senators office
anny1: you guys could check with indepepndent living centers in your area maybe
LoneWolf: that's just it anny-there are none here
LoneWolf: we livee in the dark ages in Ky
anny1: where are you
CindyB: Wonder if talking with people in the nursing homes would help, they may have some advise..people we know of course
CindyB: and their families
bayah: and we can say that we just want equal rights, you know I need 18 month to finis my degree, but the reason that I didnt finish was the loans that Id have to pay back which Iv already paid back the first set of loans I found if I wanted a loan to goto school I could get any I wanted in that way I was treated like everyone else but when It came to get a job to pay back those loans that was the problem because I cant work ar burger king to help pa
bayah: predicerment
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haa: Bayah, what state did you say you're in?
bayah: Im in Ore, were are suppose to have the Ore health plan but it dont work.
LoneWolf: ok we've gone over again-thank you everyone
CindyB: I'd like to do some interviews, find out if tey were there by choice, or had to be there because of the healthcare issues we've discussed
LoneWolf: please submit any info to list
LoneWolf: good idea Cin
CindyB: great meeting once again
haa: which list is that Judi?
anny1: ok wolf
LoneWolf: our mailing list
LoneWolf: disabled
haa: okay.
LoneWolf: Scott you are in a big city-could you make some calls
LoneWolf: goodnight guys and happy crusading
bayah: maybe we should get a letter off to the preisdent and have collective imput in it
anny1: remember to talk it up on-line
haa: okay ...see ya'll in disabled chat. bye.
LoneWolf: Yes I think that would be good maybe after info on list through week we can do that
CindyB: Scott and I being in the same state should be able to come up with something
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LoneWolf: ok
bayah: Im going to
LoneWolf: aok
LoneWolf: go for it
anny1: bye i'm gone too
LoneWolf: send your letter to list and we can copy it and send also
LoneWolf: bye anny
CindyB: bye anny
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END

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